“When we are no longer able to change a situation – we are challenged to change ourselves.” ~ Viktor E. Frankl

Everyone can look back 5 years and say wow I was so different then. We can all remember the things we did years ago that we are not able to do now. We also recognize the loss of abilities that come with the passing of time. Yes, we all become different people over time but my progression seems to be more in months than years. It’s like my life is always evolving into something new. One day I can accomplish a certain task. Then only one day later, the same chore is impossible for me to complete. Subsequently in a few weeks, I’m able to carry out the assignment again but not at the same level or intensity.

MS has stolen so much from me that I could probably name fifty aspects of my life it has touched. I guess the top things are my job, my ability to walk, my driving privileges and my independence.

As people with MS, we sometimes face immense hardships due to our physical disabilities and have to overcome social stigmas that surround the disease. Whether it is true or all in my mind, I feel that pressure every time I mingle with the general public. I usually get sympathetic smiles and nervous sounding hellos. But I also get dirty looks that I interpret as “She looks fine to me, why does she need that scooter”?

Another major obstacle is trying to integrate with “normal” society. Most events and venues do not cater to people with MS, which makes assimilation discouraging and sometimes impossible. When interaction is achieved, usually one of the first questions most commonly asked is, “So what do you do for a living?” The majority response is an answer that explains what you do to be a productive member of society. In the eyes of most people that means having a job. Many with MS have been stripped of their life long answer to that question. While in the past we could have proudly said I am a teacher, a lawyer or a waitress. Now we must deal with the fact that we are on disability or only able to work a part-time job. This lost can make conversations uncomfortable. For me, I usually promptly respond by saying, “I am retired”. Then I try to move to another subject.

I think the priority for most people with MS is striving for the best quality of life we can get. After all, multiple sclerosis does not kill us. For the most part, it is annoying and a huge inconvenience that sometimes causes problems. But unchecked, it can become a larger problem.

I acknowledge multiple sclerosis in moderation and I try my best to not let it run my life. Yet it continues to humble me and shape my world. And despite your chosen resolution, MS still has the ability to recreate a person by robbing them of their outside roles and independence. Which most times amount to their identity. I guess you can say MS is a thief. Or better yet an identity thief. Stealing who we once were.

Nobody likes being told “You’re done.” I know people who “get” to retire because of age. I “got” to leave my work for too many reasons to list here, some of which were **other people** not knowing how to deal with someone with MS (and I wasn’t the only one who had that difficulty, again, long story). But that’s what we get. Oh well. So, we do the best we can with what we got. Which is true for every human on the planet. It’s true for you, it’s true for Steven Hawking, it’s true for everyone. But, as MSers, we “get” to deal with even more Stuff.

And now, something new is asked of you. Interfacing with the world from a wheelchair. Which is being asked of me, as well. Ain’t MS fun? Well, don’t know about *that*, but “bored” is a problem I never have.

Thanks for your honest assessment of MS. I’m newly diagnosed, but apparently have had ms for at least 10 years. It has been less then a year since my formal diagnosis and I can already feel myself changing into a completely different person; a person I don’t think I am going to like that much. But ms doesn’t give us much choice. We just got to soldier on. My new month’s resolution is that I promised myself that I would laugh more. If it’s one thing ms has stolen from me it’s my sense of humour.

Hi Nicole, Wow your words are powerful and accurate for me, as I could not have said it better. I will be coming up on 5 years this fall, however, I was misdiagnosed for six + years. I too had to retire at age 45. This disease is something else!!!! Take care and stay strong.

Another great post that I can feel with my entire being. The only difference for me is that I rarely go out in public for any circumstance. Only exception is a doctor’s appointment. I even have my blood work drawn in my house. I have chosen to isolate myself because this me is not who I was. I don’t want anyone who knows me to see me this way. I am embarrassed and humiliated at what I have become. Just five years ago I was a regular able bodied me. Now I am just a shell of what was once me. Thank you for always being honest about our MS and not dressing up the reality we live.

You have no reason to be embarrassed by the condition of your body! You did not choose MS. I struggled with the same issues but realized that I feel better when I get out. Maybe it’s church, dinner with the hubby, or a quick trip through a store, but getting out and getting out helps. Sure, people look at me funny and wonder why I’m in a wheelchair…especially if I’m in their way or they have to wait for me, but I have just as much right to be there as they do. As for seeing someone you know, you are assuming those friendships were based on your body, it’s appearance of health and it’s ability to function. My experience is that many (not all) want to continue the relationship but need some clues on what works for you.

Melissa,
I am new to the post, and understand how you feel when you say you don’t like going out in the public. I am a caretaker, who has a daughter with progressive MS. I am the spokesman for her, in every sense dealing with this MS because the disease has robbed her of the cognitive ability to think, express and understand just basic conversations. I get tired of the stares from people, and moreover tired from speaking for her. This MS disease has robbed my whole family of a normal lifestyle.

NEVER BE EMBARRASSED BY WHO YOU ARE. THERE IS SO MUCH TO BE GRATEFUL FOR. YOU MAY NOT BE THE “SAME PHYSICAL” PERSON YOU WERE, BUT, NONE THE LESS YOU ARE A LIVING BREATHING BEING. GO OUT & ENJOY YOURSELF..LISTEN TO MUSIC. I HAVE HAD MS FOR 15 YRS NOW…I’M IN A SCOOTER 24/7 & HAVE THE USE OF ONLY MY RIGHT HAND (TYPING WITH ONLY MY INDEX FINGER) BUT I STILL FIND SO MUCH I CAN DO & ENJOY! SO CAN YOU! I HAVE A 37 YR OLD NEFHEW WHO HAS SPINAL MUSCULAR ATROPHY, CONFINED TO A WHEEL CHAIR ALL HIS LIFE, CAN ONLY MOVE HIS HEAD & HE WORKS FULL TIME. DON’T GIVE UP!

I sympathise with you and wish you well. I fear that MS forced you to retire too early, whereas I was almost at the end of my career. So I can say that I am a retired equestrian journalist with years of experience.

If anyone pries further, and suggests that I must do something, I say that I write fiction. But I can still get the disapproving looks and even comments.